Van Brakel Wim H, Officer Alana
Royal Tropical Institute (KIT), Leprosy Unit, Wibautstraat 137k, Amsterdam, The Netherlands.
Lepr Rev. 2008 Mar;79(1):50-64.
To review the current state-of-the-art of measuring disability in the context of countries where leprosy is endemic.
Estimates of the prevalence of disability are often based on scanty data, collected with a myriad of different instruments. This is true for all four components of the International Classification of Functioning, Disability and Health (ICF); 1) body functions and structures, 2) activities and participation, 3) personal factors and 4) environmental factors, and for disability-related quality of life. There is an urgent need for data on leprosy-related disability, as well as for data on disability due to other causes. Data is needed as baseline for rehabilitation programmes, individual interventions, for programme monitoring and evaluation and for advocacy.
Measurement instruments and qualitative data collection techniques now exist which are directly applicable in the context of most leprosy-endemic countries. We discuss several instruments compatible with the ICF conceptual framework. A validated generic instrument for measuring impairment is currently not available. For measuring activity and participation, we recommend the WHODAS, the SALSA scale and the Participation Scale. We recommend an inclusive focus, where people with leprosy-related disability are seen as a sub-group of people with disability in the wider context, since many of their needs are the same as those of others. The need for validation and collection of normative reference data is also discussed.
Programmes and research projects should choose an appropriate set of tools and methods and seek to apply these systematically. This choice should be guided by data on the validity of these tools in the concerned context. Instruments should be revalidated formally in every new context. Similarly, locally relevant normative data should be collected and applied to ensure that decisions are based on valid interpretations and conclusions.
回顾在麻风病流行国家中测量残疾情况的当前技术水平。
残疾患病率的估计往往基于用大量不同工具收集的稀少数据。《国际功能、残疾和健康分类》（ICF）的所有四个组成部分均是如此；1）身体功能和结构，2）活动与参与，3）个人因素，以及4）环境因素，以及与残疾相关的生活质量。迫切需要有关麻风病相关残疾的数据，以及其他原因导致的残疾数据。这些数据是康复计划、个体干预、计划监测与评估以及宣传的基线。
现在存在直接适用于大多数麻风病流行国家情况的测量工具和定性数据收集技术。我们讨论了几种与ICF概念框架兼容的工具。目前尚无经过验证的用于测量损伤的通用工具。对于测量活动与参与，我们推荐世界卫生组织残疾评定量表（WHODAS）、麻风病特异性活动受限和残障评估量表（SALSA量表）以及参与量表。我们建议采用包容性的视角，将麻风病相关残疾者视为更广泛背景下残疾人群体的一个子群体，因为他们的许多需求与其他人相同。还讨论了验证和收集规范性参考数据的必要性。
计划和研究项目应选择一套合适的工具和方法，并力求系统地应用这些工具和方法。这种选择应以这些工具在相关背景下的有效性数据为指导。在每个新的背景下都应正式重新验证工具。同样，应收集并应用与当地相关的规范性数据，以确保决策基于有效的解释和结论。
